Thank God that today was a better day for Madison. We received some good and not so good news so it was so great to have another adult with me to help balance out all of the emotions of what is going on. Jed arrived safety last night and was so anxious to go see Maddie. She was thrilled to open her eyes long enough to show him all the bruises, band aids and wristbands! Madison slept really well for the 5 hours that we were at the hotel. She is still really uncomfortable from the test yesterday. She has developed a horrible rash on her booty and has what they are equating to 2nd degree burns all over her bottom from all of the fluids that she is loosing from the enema that are bothering her skin. I think that I changed 25 plus dirty diapers yesterday so you can only imagine what she does when I come after her with wipes or a washcloth to change her.
We were at the hospital at 7am and had to get an xray so that Dr. Levitt could see what had progressed after we left yesterday. At 8 am we had a 1 ½ hour conference with the dr's and the other 7 families that are going through the same program that we are. It was so good and sooooo encouraging to hear him talk so specifically about what kind of chronic problems our kids have and reassure us that they can help 95% of us there! We then met with Dr. Levitt and Lyndsey (who is our nurse for the next week) to go over what they had found from all of the test. We were very impressed with Dr Levitt as this was the first time that we have ever met him. He is an amazing man! After talking with him for a few minutes he pulled out Madison's film from this morning. He said that she has an unbelievably large colon – 4 to 7 times larger than normal. He mentioned that it is almost the as wide as she is...YIKES. He told his partner several times that he was shocked at how large it was. I would not have been alarmed by that if this man was a pediatrician that dealt with all kinds of problems in a day – but coming from a guy who deals with this kind of problem all day long I was surprised at his reaction to it. The x-ray showed that she still has the majority of the contrast fluid inside her colon after 24 hours. He said that the “normal colon” would have released all of that fluid 5 minutes after the test. This confirmed for him that she has an unbelievably slow moving colon. He talked about her past history and then told us that he really feels like she needs to undergo a surgery to remove a large portion of her colon. They feel like her upper colon is normal and healthy and by removing the lower section, pulling down the upper colon and then reattaching it to the rectum she would have a very good chance at reaching bowel control. We were not at all expecting to hear that diagnosis. It has been hard to swallow but we will be talking at length about it here soon. He feels like we should take the next month or so and try to clean out her colon and see what happens. There main concern right now is getting her cleaned out. She is still so distended and is not eating or drinking because there is simply no room in her body. To clean her out we will be administering enemas ourselves tonight and tomorrow (for the nurses that are reading and like details we are giving 500cc plus 1 fleet 1x tonight and then 500cc plus fleet 3xs tomorrow). We just finished the first one and it was HORRIBLE. It took 3 adults to hold her down. She is so sick of having them and as soon as she sees the bag hanging and the tubes she freaks. Please pray for strength for all of us tomorrow as it will be very difficult to get all 3 in successfully.
We know that little Madison is in Gods hands and are so thankful for her little life. It is so hard to not keep in perspective how blessed we are when you are at a hospital like Cincinnati Children's. At every turn there is some one who is so worse off then you. I have hugged Madison more in the last 3 days then in the last year. I hate to take my eyes off of her. She is such a strong girl and we are so thankful that we can all be together in these difficult times.
We will continue to update you as we get more info and results. We would especially appreciate your prayers in regards to the possible surgery right around the corner. I have attached a picture of what the surgery would involve.
Love you all and appreciate more than you will know your support throughout these difficult times.
Madison has officially been diagnosed with idiopathic constipation. The following link is Dr. Levitt definition of the diagnosis and the treatment.